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Sunday, February 7, 2016

Feeding Tube Awareness Week - Day 1

Welcome to FEEDING TUBE AWARENESS WEEK 2016! That's right, for the next 7 days I will be posting about all things tubie. I will have funnies, hard to hear, and everything in between. This will be a chance for you to get to know our family and our journey with a feeding tube. So, if you have a question you would like to ask, please feel free to do so in the comments and I will promise to answer it for you. No question is silly, no question is stupid, ask away. I would like to get started with the most common questions we are asked or things said to us. MOST of the time these aren't asked out of honest care and sincerity (well, the first one is, but the rest aren't). But, I will still give them attention because, as I said, there are no dumb questions.

"When is he getting the tube out" - This is the number 1 most common question most tubies get asked. My answer is what most people answer, I don't know. His doctors don't know. No one knows. When he can thrive and survive without his tube, he will have it out. But, that means he has to thrive and survive for at least a year without it before we remove it. This could be a few years from now, it could be when he's a young adult, it could be never. So, please don't be offended when we say we don't know. We honestly don't know.

"Just don't feed him eventually he will get hungry" - I always laugh at this one. Just don't feed him (aka starve him to death) and he will get hungry (even though I know nothing about his medical issues and don't know that his body doesn't feel hunger the way our bodies do so, no, he won't get hungry. Please, before you say something like this to a tubie parent, think about what they are hearing. They hear, "you don't know what you are doing and have medically abused your child because he missed one single meal". Just to let you know, most of our kids would very much starve before they would eat. My son's body was doing just that.

"Just put food in his mouth" - Tell ya what, you put food in his mouth. I will hand you the rag you will need when he either spits it back out at you or, if he attempts to eat it when he can't, the multiple rags you will need when he throws up on you. You let me know how that works for you and then get back to me about "just put(ting) food in his mouth". LOL.

"You just chose the easy route" - Most of these I can laugh about and do. This one makes me angry. No, I didn't choose the easy route. No, my doctor didn't choose the easy route. In fact, this was the hardest decision we ever made as parents. It involved years of testing, therapy to help him eat, scopes to see why he wasn't eating, doctor visit after doctor visit to work through med changes and new ideas. It took my GI looking me right in the eye saying, "it is time, you have done all you can do to keep him from this tube". I walked out crying that day. I felt like a failure. I knew, logically, I had done everything I could do. We had used multiple therapists and therapies, too many meds to list, and had done everything our doctor asked of us. It wasn't enough because it wasn't what his body needed. Oh, and lest you think it's easy to tube feed, think about. How easy is it to make your child a sandwich, put a side of fruit, a few carrot sticks, and maybe some chips on a plate? Now, do all of that, but make sure you measure and weigh every single ingredient as you put it on the plate. Also, make sure to keep out all allergens. Add in that you will need to know EXACTLY how much of that food he ate so you can put it in his daily calorie journal so you know how much he's missing each meal. Then, you have to compensate by blending just the right mix of foods in your blender, then spend 30 minutes slowly hand squeezing it into his tube. Add in that you just dirtied twice the amount of dishes, pots, pans, etc as the typical person does in a meal since you made two meals in one, and you realize once you get up from tube feeding your child you have to wash all of those dishes. Oh, and you have to do it all while still caring for your tube fed child's other needs, making sure to stay on top of their meds, caring for any other children you are blessed with, caring for your home, caring for your spouse, and more.

"Is that REALLY necessary" - Yes. It is.

"Can't you do that in the bathroom or car" - No, I can't. YOU go eat in the bathroom stall or sitting in a car when it's 105 degrees outside or 22 degrees outside if this bothers you.

"That's gross" (talking about the simple presence of the tube on his stomach which you saw simply because you looked over just as he raise his hands high enough to show a bit of his belly) - No, it's not. But, please, while you are smacking your food/gum with your mouth wide open, spitting while you talk with your mouth full, tell me how this tiny near clear, plastic piece on his belly disgusts you.

OK, now that that's over with, let's move on to actual awareness for those who are concerned and care about others (Which I know will mean all of my readers). I will be back with more on this topic as the week goes on.